Surviving to live another day

It started innocently enough: I was complaining about being short of breath at a dinner party. Several physicians were at the table; one suggested that it might be possible to increase lung capacity by doing exercises with a spirometer. “I’m not a pulmonologist,” he said, “so I don’t know; it’s just a thought.”

Incentive_spirometer

The thought was planted. I fired off an email to my primary care physician (we love Kaiser Permanente) asking if she knew of such a thing, and/or might refer me to someone to give it a try. She replied with a request that I come into the office so she could evaluate me. Well, grump, grump; all I wanted was a quick fix, but anyway. It takes all of about 10 minutes to get to the Kaiser Medical Center. I arrived for an 11 AM appointment.

The good Dr. Tang patiently explained that she did not prescribe via email. And because it had been 2 or 3 years since we last examined the heart/lung situation she would like to do another work-up, to see about this shortness of breath business. She went very lightly on the issue of my being 83 years old for heavens sakes, although she did mention she had 60-ish patients in worse shape than I. (This is a compliment, coming from one’s physician whom one reminds of her mother, although I was still looking for some magic way to walk uphill without having to stop and catch my breath.)

She then ordered a zillion blood tests, an EKG and a chest X-ray. Still grumping a little, I set out for all these, vowing that if even the smallest of lines appeared I would just come do it all another day. It took me roughly 3 minutes to get in for the EKG, less for the X-ray, and when I got down one more floor to the lab and pulled ticket #372 the automated voice was already saying “Now serving #372 at Station #4.” After dutifully following all these instructions, I went home to take a nap.

Within an hour, a voice mail message arrived from my doctor. “Your tests are fine, I don’t want to alarm you. But I’d like for you to come back in right away. Just tell the front desk you’re here.” Alarmed, I set out for the Medical Center once again. Lung cancer. Definitely. A spot on the lung showed up on the X-ray, and I will definitely die of lunch cancer in the immediate future. fear

Fortunately, the 10-minute drive didn’t allow too much time to contemplate my impending demise. “No, your X-ray is fine!,” she said. “Your lungs are fine! It’s just this one test that came back pretty high. It’s a screening test for possible blood clot. These tests are set very high because we don’t want to miss anything. Still, I want to be sure there’s no clot there that could indicate a pulmonary embolism causing your shortness of breath.” OK, I prefer not to have clots floating around in my bloodstream.

So does Dr. Tang. Whereupon she ordered a CT scan – which meant walking uphill a block to the hospital where they have those fancy machines (and radiologists to read what the machines report.) “Once you’re done,” she said, “come back to the office and as soon as we have the results we can talk about them.” I set out on the brief uphill walk. Pulmonary embolism. Definitely. Isn’t that what did in my mother at age 70? Embolism, aneurism, something blood-clotty. I’ll probably die of pulmonary embolism before I get back down this hill.Grim reaper

It is now close enough to closing time that most Kaiser people are closing up. But the CT scan people wait for me, hook me up to the dye thing and run me back and forth through the machine. I walk back downhill, mildly optimistic because nobody gasped while I was getting dressed in the cubicle several feet from the scan people. With nobody now at the receptionist desk, I walk into the nursing/examining room area and tell a smiling nurse that I’ll be outside if Dr. Tang needs me. And sure enough, in another 5 minutes – not enough time to consider calling the crematorium – she comes bursting through the door saying she’s so glad I waited.

“As I said, these screens are set very high so that we don’t miss anything,” she begins. “In your case, there was nothing to miss. It was just a false positive.” I exhale. We talk briefly about how I might increase my exercise regimen if possible – which might even address the shortness of breath issue; I concede that I am, indeed, 83.

On the way home, no longer planning to die in the immediate future, I count the cost: six hours, several hundred dollars co-pay. And I give thanks for our Kaiser membership, modern medical technology and my good doctor.

happiness

 

 

Breast Cancer? Ask questions!

In honor of International Women’s Day (even if I didn’t quite get it finished in time,) this brief message is about a book recently re-issued by Dr. William H. Goodson III that should be in the hands of every woman with breast cancer, wanting to understand breast cancer or helping someone who is going through breast cancer.

Pink flower

It’s Your Body . . . ASK is a guidebook for talking with your doctor about breast cancer. I would’ve given anything to have had it when I had breast cancer, and a mastectomy, a dozen years ago. Maybe I would’ve made different decisions, maybe not. But the reality is this: most women, unless they have had medical training, would never think to ask a question like “What are the side effects of removing axillary nodes?” Personally, I didn’t think to ask about nodes at all. Other than considering the size of my cancer, in fact, questions I might have asked about its rate of growth, alternative treatments, follow-up therapies – – were mostly not discussed because I didn’t know to ask them.

This is a book that gives not just answers (it offers many answers about families, about hormone-based therapies and other issues) but more importantly: questions. If you, a breast cancer patient, know the questions, your doctor needs to give you the answers. What’s that lump about? What about these other pains and symptoms I have? What are all of my treatment options?

(I would say, here, Full disclosure: Dr, Goodson is a friend of mine. But it would be more braggadocio than disclosure. Bill Goodson and I shared a few discussion program podiums It's Your Bodyseveral years ago when his gripping novel about sexual violence against women, The Blue-Eyed Girl and my Perilous Times: An inside look at abortion before – and after – Roe v Wade were both newly released. I’m a writer. He’s a Senior Scientist at California Pacific Medical Center Research Institute; a recognized leader in breast cancer care who has been (among other things) a Professor of Surgery at the University of California San Francisco and President of the San Francisco Medical Society, and is listed in The Best Doctors in America.)

Credentials aside, It’s Your Body . . . ASK is worth a look. It offers a pathway through turbulent times, which can be far less turbulent if you have some help in steering your own ship.

Check it out.

Live longer, healthier: prospects ahead

More news just in on the health and longevity front. At the University of California San Francisco medical center, which I can see from my studio window but that’s about as close as I will ever come to claiming kinship, a clinical trial getting underway will investigate the telomere factor. You haven’t been worried about your telomeres? Get used to them. It hasn’t been so long since cholesterol and genomes became household words.

Bay Area women who volunteer for a clinical trial at UCSF will be among the first people in the world to learn the length of their telomeres – the protective caps at the ends of chromosomes that regulate cell aging and may help people live longer, healthier lives.

Research has shown that the length of people’s telomeres is related to their “cellular age” – the health and stability of certain cells in their body. Because telomere length helps determine cellular health, it’s also been identified as a possible biomarker that can reveal information about a person’s overall health. Short telomeres have been linked to health problems like heart disease and diabetes.

UCSF researchers say it’s possible that identifying a person’s telomere length someday could become as common as checking cholesterol levels. A handful of private companies already have started advertising telomere testing to individuals. In fact, two of the researchers involved in the UCSF study are looking into starting their own company to test telomere length.

The study, reported by Erin Allday in today’s San Francisco Chronicle, will concern such issues as what relationship your telomeres’ length have to health and aging in general, and whether you even need to know a lot about the little cellular-ites. “The idea of telling people their telomere length is totally new and somewhat radical…,” said Elissa Epel, an associate professor of psychiatry at UCSF and one of the lead researchers in the telomere study. (On a purely personal, though relative note: you just try not to worry about it all when you are overage — they want women 50 to 65 — for an aging study and the lead researcher looks like she’s about as old as your granddaughter.)

Medical ethicists say the UCSF study makes sense – as more attention is drawn to telomere length as a potential marker of overall health, doctors should understand whether it benefits their patients to get that information or not.

If people can’t change their telomere length, there may be no point in telling them. Telomere length may be similar to some types of genetic testing that tell people whether they’re at increased risk for Alzheimer’s disease or certain types of cancer, said Arthur Caplan, director of the University of Pennsylvania Center for Bioethics.

Some individuals may decide they want that information – but it’s not always an easy decision to make, he said. “You might find out that you seem to be a premature or rapid ager, but whether there’s anything anybody can do to stop it or reverse it, that remains to be seen,” Caplan said.

How much our telomeres will tell us, what use we can make of it all, and whether you and I really want to know — these issues remain to be seen. Or at least, to be discovered in  the coming study. I have absolute trust in the folks at UCSF. If you do too, and you fit the parameters (female living somewhere in this lovely part of California, between 50 and 65) and want to volunteer to be a part of it all, whip off an e-mail to knowyourtelomeres@ucsf.edu.

UCSF to look at new longevity, health marker.

On being treated to death – Part II

Is there a fate worse than death? Yes. In the U.S., often it is the fate of dying slowly: aggressively treated, over-treated and worn down by the system until that fate has made death truly a blessed relief.

Deborah Wright, an ordained Presbyterian minister and writer now working in secular fields while simultaneously serving as personal pastor to many, forwarded an article that proves out the fate-worse-than-death highlighted in this and recent other articles (see June 25 post below.) The fact that stands out, she comments, is that “the length of time we use palliative care services is growing shorter — because we start it too late.”

We start palliative care too late, we treat too aggressively and too long. The opening story in AP writer Marilynn Marchione’s thoughtful, poignant article just published in Daily Finance serves as a classic example:

The doctors finally let Rosaria Vandenberg go home.

For the first time in months, she was able to touch her 2-year-old daughter who had been afraid of the tubes and machines in the hospital. The little girl climbed up onto her mother’s bed, surrounded by family photos, toys and the comfort of home. They shared one last tender moment together before Vandenberg slipped back into unconsciousness.

Vandenberg, 32, died the next day.

That precious time at home could have come sooner if the family had known how to talk about alternatives to aggressive treatment, said Vandenberg’s sister-in-law, Alexandra Drane.

Instead, Vandenberg, a pharmacist in Franklin, Mass., had endured two surgeries, chemotherapy and radiation for an incurable brain tumor before she died in July 2004.

“We would have had a very different discussion about that second surgery and chemotherapy. We might have just taken her home and stuck her in a beautiful chair outside under the sun and let her gorgeous little daughter play around her — not just torture her” in the hospital, Drane said.

Marchione tells other stories of patients who might have had far more peaceful final days — and of patients who chose extensive, aggressive or experimental treatment for a variety of reasons. It should be the individual’s choice. But the reality is that discussion of palliative care or hospice care (there is a difference: hospice involves declining further treatment; with the newer “palliative care” concept some therapies may be continued) simply doesn’t happen until too late. If it happened sooner, many of us — likely including Rosaria Vandenberg — would choose hospice care over aggressive end-of-life treatment.  But physicians are too busy talking treatment, and patients have not considered their other choices. Comfort and peace lose to the system.

An article posted today on the website of the National Hospice and Palliative Care Organization points the finger in the right direction, right at you and me. If we took the time and energy to write our advance directives, and talk them over with family and friends, millions of days of suffering and millions of wasted dollars would be saved.

Recent media coverage on the challenges patients and families face with overtreatment of a life-limiting illness brings the issues of hospice and palliative care and advance care planning to public attention.

“It’s important to remember that quality of life and a patient’s personal wishes, beliefs and values must be a factor when making care decisions brought about by a serious or terminal illness,” said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization.

“Discussions helping patients and families understand the many benefits of hospice and palliative care must be more common and held long before a family faces a medical crisis,” Schumacher added.

Advance care planning—which includes completing a living will and appointing a healthcare proxy—is somewhat like planning a road trip to an unfamiliar destination.  Very few people would expect to get to a destination safely and comfortably without having a well-thought-out map in hand.   Yet, it’s estimated that 70 percent of Americans have not completed a living will.

  • A living will charts the course for your healthcare, letting your family and health care providers know what procedures and treatments you would want provided to you—and under what conditions.
  • A healthcare proxy or healthcare power of attorney form, allows you to choose someone you trust to take charge of your healthcare decisions in case you are unable to make those decisions yourself.
  • Advance directives can be changed as an individual’s situation or wishes change.

Still, you and I put it off. Or you may be putting it off, at least, and if so you are taking an absurdly unnecessary risk. You could, instead, download free forms, fill them out and avoid that risk.

Deborah Wright has shepherded countless friends and family members through their final days, and knows what a blessing hospice and palliative care can be. Problem is, though, “we start it too late.”

Americans are treated, and overtreated, to death – DailyFinance.

Your doctor's in shape… but may just be getting in shape to retire

U.S. doctors as a group are “leaner, fitter and live longer than average Americans… male physicians keep their cholesterol and blood pressure lower… women doctors are more likely to use hormone-replacement therapy than their patients,” according to several recent surveys.

That’s the good news.

The bad news is that they are taking all this health and fitness into early retirement. And thanks to the hordes of baby boomers hanging up their stethoscopes for good, finding enough doctors in any shape at all is going to be a challenge, particularly in light of the numbers of newly insured.

Nearly 40 percent of doctors are 55 or older, according to the Center for Workforce Studies of the Association of American Medical Colleges. Included in that group are doctors whose specialties will be the pillars of providing care in 2014, when the overhaul kicks in; family medicine and general practitioners (37 percent); general surgeons (42 percent); pediatrics (33 percent), and internal medicine and pediatrics (35 percent).

About a third of the much larger nursing workforce is 50 or older, and about 55 percent expressed an intention to retire in the next 10 years, according to a Nursing Management Aging Workforce Survey by the Bernard Hodes Group. New registered nurses are flowing from colleges, but not enough to replace the number planning to leave the profession.

“Moving into the future, we see a very large shortage of nurses, about 300,000,” said Peter Buerhaus, a nurse and health-care economist and a professor at Vanderbilt University. “That number does not account for the demand created by reform. That’s a knockout number. It knocks the system down. It stops it.”

According to the census, baby boomers include the 66 million Americans born between 1946 and 1964.

In an article for the Journal of the American Medical Association, Buerhaus and colleagues Douglas Staiger and David Auerbach predicted that there will be at least 100,000 fewer doctors in the workplace than the 1.1 million the federal government projects will be needed in 2020 under the health-care overhaul.

“There’s a much more rapid retirement of physicians,” Buerhaus said. “What does this retirement mean? This will mean at least 100,000 fewer doctors in the workplace in 2020.”He said the article does not estimate the change in demand or the level of recruitment by medical colleges, which is being beefed up significantly under the health-care law.

Although current studies involve more than a little conjecture — Will professions in the medical field continue to be as attractive as other areas? Will doctors and nurses work longer if truly needed? — there is no doubt about the coming shortage.

Lori Heim, president of the American Association of Family Practitioners, said someone might soon have to replace her. “My age group is looking at when we are going to retire,” said Heim, who is 54. “More physicians are changing their practice, doing things that have less calls. They want administrative roles.”

Heim said her statement is based on an impression. “I haven’t seen any numbers on this.” But, she said, her association is among the many that for years have pointed out the shortage of primary care doctors and nurses to the White House and Congress.

Staying healthy might be the best defense.

Retirements by baby-boomer doctors, nurses could strain overhaul.

Grief: A mind/body conundrum

Physician treating a patient. Red-figure Attic...

Image via Wikipedia

This is a cautionary tale.

The main character, a woman of a certain age, became concerned about suddenly being short of breath. Nine months earlier she had defended her title in a 5k community road race, so it didn’t seem to make sense that she would be huffing and puffing after one block on a slight incline. She worried more and more, and finally went to see her primary care physician.

“No,” said the doctor, “this should not be. We’ll start with a stress test to check out the heart, and then go with a pulmonary function test. Recent x-rays haven’t shown anything wrong with your lungs, but we’ll want to make sure.”

The patient aced the stress test, which relieved everyone. Subsequently, at the end of the pulmonary function tests she did the six-minute walk, as instructed, regular pace, and the nurse who had been following along in case she conked out said, “Well, you’ve got no shortness of breath, and I’m exhausted.”

In between, an interesting thing had happened. During a visit with her niece, who is a family practice physician in another state, the medical dilemma happened to come up. “Well,” said the niece, rather gently, “you’re doing all the right things: seeing your doctor, having a stress test first, checking pulmonary function. But when all is said and done you did just lose a sister to respiratory failure, while you were still grieving the loss of another sister almost within the same year…   It could be that your body is just trying to tell you something.”

Almost immediately I felt better. Went ahead with the pulmonary function test just to err on the side of caution, but by then I was feeling so much better that just walking around that hospital corridor at what felt a leisurely pace was still enough to wear out a nurse who is 10 years younger. She hadn’t told me she was required to follow. And of course, at the start of it all, I hadn’t thought to mention anything about sibling loss to my primary care doctor. Communication is good.

Soon afterwards, I attended a meeting at which the keynote speaker was Lyn Prashant, founder of an organization called Degriefing. Among the handouts was a page headed “Common Grief Reactions,” featuring lists of physical, emotional and mental responses to grief. Number 5 under Physical? You guessed it: shortness of breath.

Who knew? Certainly not this writer, who has only spent the past three decades intensely involved with end-of-life issues. Hospice volunteer, part of an AIDS support group throughout the 1990s, currently a chapter board member and client volunteer for Compassion and Choices, author of dozens of articles and one book about end-of-life issues. Never heard of any of those physical manifestations of grief — or if I had, they were too abstract to register.

That was then, this is now: Loss, sorrow, grief — is it all in your head? Maybe not.

Medical marijuana: a boon & a challenge

When my sister Mimi found that marijuana could relieve her severe gastrointestinal distress, years ago, one joint after dinner was all it took. Unfortunately we couldn’t keep up the supply. After one foray into the rather scary realm of pot-dealing in a state (Georgia) where we could have wound up in jail very quickly, we decided that not even such clear relief was worth the risk.

Today, at least in California and 14 other states — with the District of Columbia possibly to be added soon — the risk is minimal but the dosage is fuzzy. The conundrum was outlined by writer Lena K. Sun in the San Francisco Chronicle:

On Tuesday, District of Columbia officials gave final approval to a bill establishing a legal medical marijuana program. If Congress signs off, D.C. doctors – like their counterparts in 14 states – will be allowed to add pot to therapies they can recommend to certain patients, who will then eat it, smoke it or vaporize it until they decide they are, well, high enough.

The exact dosage and means of delivery – as well as the sometimes perplexing process of obtaining a drug that remains illegal under federal law – will be left largely up to the patient. Doctors say that upends the way they are used to dispensing medication, giving the straitlaced medical establishment a whiff of the freewheeling world of weed.

Even in states where marijuana is allowed for medical use, doctors cannot write prescriptions because of the drug’s status as an illegal substance. Physicians can only recommend it, and have no control over the quality of the drug their patients acquire.

Because there are no uniform standards for medical marijuana, doctors have to rely on the experience of other doctors and their own judgment. That, they say, can lead to abuse.

California’s “quick-in, quick-out mills” that readily hand out recommendations have proliferated, worrying advocates. The state, the first to legalize medical marijuana 14 years ago, allows for a wider range of conditions, including anxiety.

To guard against abuse, some doctors say they recommend marijuana only after patients exhaust other remedies. Some doctors perform drug tests as part of pre-screenings.

Mimi died over a year ago. Her last decades, like almost all of her adult life, were spent in the State of Georgia, where medical marijuana is still against the law. I know what her required dosage was; legalization and proper oversight would allow doctors to learn dosages that work for their patients. It seems worse than cruel that thousands of other sick and dying citizens continue to be denied the potential relief that legalized medical marijuana could bring.

Dispensing medical pot a challenge for doctors.